Starting tube feeds again...

My 14 month old has a Gtube, been in for a year but hasn't been used in about 5 months. Pedi wanted to take it out but she is still FTT and GI wants it in and were awaiting a dietician apt on feb 6th to talk about using the tube again...but...

DD has been showing some sings that make me feel we need to do tube feeds sooner. She's started having trembling of her body while sleeping and awake. Today it seems like she was loosing her balance a ton. After talking to a friend I've really started to worry about her intake (8oz of pediasure a day if I'm lucky) her goal set by GI in November was 24oz and its never happened.

So I'm trying to come up with a plan but I have no idea what to do. We have to go slow because she wretches with too much volume (DGE and Nissen to thank for that) I was thinking to do small bolus feeds sores out throughout the day but I need to run errands tomorrow and that may be a challenge. Or we have our pump still but I'd hate to put her on a continuous because she's a mover and we have only ever used the pump at night.

Help me with a plan because I've never done this without drs orders of what to do and I feel like I'm going into this blind because my daughter is obviously deteriorating and no one can see us fast enough to make a difference.

Comments (13)

Call your doctor and let them know. If you can't get some direction, I would start with very slow continuous feeds and just watch for wretching and gagging. 8oz a day is not enough. If she wretches give her a break and then start again only slower. I would only do this while you're actively trying to get a hold of the Dr on the phone for a plan specifically for your child and her needs though. ((hugs)) Let us know!

She is still FTT but the Dr wants to take her tube out? That makes no sense. Also, if she's only getting 8 oz a day, she is likely dehydrated (and obviously is not getting crap for calories). That is exactly what the tube is there for, use it! Get some water in her. Bolus an oz, wait and see how she does. Do it again if she's not gaggy. As for feeding, call the GI and tell them what her intake has been. You can't wait till the 6th to come up with a plan if she's only taking in 8 oz per day. You are probably bordering on hospitalization with her at this point for the dehydration alone.

Just alled to GI. He wants her on 10 hour continuous feeds at night and then were to offer her 4oz of pediasure at a time and then what she won't finish we have to bolus.

Yay a plan!! Lol 3 weeks of me being worrie sick about her intake and we finally have a plan.

He wants to do another upper GI to look at her swallow too because he's wondering if something is affecting he swallow. I think it's probably just because of Her Nissen but I could be wrong. Hopefully she's not silently aspirating again...I'm pretty sure I'd cry. She's had her Nissen a year, not sure how long they last but I DON'T want to have to re do it.

Also does anyone know how long you can leave pediasure peptide in a feeding bag? I'm just wondering how often ill have to get up at night.

Ok, they want me to start it somewhat early in the evening so she can be done a few hours before she wakes for breakfast. They said 4pm but I'm going to wait until closest to 7 or so. We get to bed late some days and up around 9am, not 6am like the nurse was talking lol.

I'm not sure how I'm going to tape up all that tubing while she is playing either. She's allergic to most adhesive on tapes as she's allergic to latex. We're waiting on tape from the DME but it won't come until next Friday :(

When I have to tape anything to my DS I always tape to his clothes, never his skin. I taped his PEG tube to a onsie everyday, and then just covered it with a T-shirt.

I've heard lots of people talk about putting an ice-pack on the feed bag, but we were told that we shouldn't feed cool liquids through the tube, b/c the esophagus actually warms your food/drink on the way to the stomach, so if you put something cold directly into the stomach, it's going to be a shock to the system. I don't know if different feed bags vary, but ours keeps the milk good for four hours.

Just an FYI about when to start/stop night feeds. The body's GI system naturally slows down around 3am, so continuous feeding after that can lead to vomiting (or gagging, etc. if vomiting isn't possible) upon waking.

I believe she's having major issues tolerating the feeds. After about 3 hours she starts screaming and is totally inconsolable until I turn the pump off. She's only on 30ml an hour. But that's 10ml more than she was when she was younger. It's been like that for 4 days so I think I need to mess with the rate. I'm goin to take it down to 25ml tonight and see what happens.

Pediasure, like most commercial formulas, is pretty hard for the body to digest. At her age, could you try a blended diet that contained some real food plus milk or something similar as a carrier? Blended diets are easier to digest, generally easy to make, and can help a lot with gagging from fundo. They usually can be given at a faster rate too since they digest more easily.

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Jennifer...Alaska Hobby Farmer Married to J (11/07), Mom to Big M (7/11) and Little M (5/6/14)...Gwen is a goat, Echo is a horse!

I'm not too sure on blended diets...I've looked into them but haven't really tried. She eats regular foods orally its liquids she doesn't do well and her pediasure is her biggest scource of calories. I know you can make blended diets high calorie like foods just not sure if her GI will be on board with it. I'll look into it more and bring it up. Is it easy to travel with a blended diet though? I have days where I'm out of the house with her well ino her tube feed at night, we start it right around 7pm and bedtime isn't until 9:30 or so for her.